Medical Update

So if you follow me on the social networks, you know there’s some stuff going wrong with me. Here’s the fuller scoop.

A few months ago (July, to be precise) I had an outbreak of a rash. It looked like hives and acted like hives, flaring up at night when I worked, and fading away during the day when I was at home. Some days, the rash was accompanied by swollen and sore joints — mainly fingers, hands, elbows and knees. After about a month or so, it slowly got better and went away.

Suspicions at the time were that it was an allergic reaction to the dry-cleaning chemicals they used on my costumes. So I wore some of my own stuff, and they switched my costumes to regular wet-wash, and that was that. All better. OR SO WE THOUGHT!

A couple of weeks ago, the rash started appearing again. Exact same areas (backs of arms, backs of hands, thighs) in the exact same grow/fade cycles. But it came on stronger, and faster, and the joint pain came faster and stronger too. Add in a sore throat, and I headed not to Disney’s health services, but to an actual doctor. I was looked over and put on a 5-day blast of Prednisone (oh, how I never hoped to be on that steroid again), and was told to keep using Benadryl for the itching, and to come back in three days for a follow-up. They took some blood for various tests to look at rheumatoid factors, lupus, and various other weird rash/joint things.

So I finished out my work week, still rashy and joint-painy and sore-throaty. My follow-up appointment was Wednesday, two days ago. I woke up that morning with the previous day’s rash still mottling my skin, and the most incredibly painful joints yet. I couldn’t move my arms above chest level. I couldn’t make fists. I could barely walk. The doctors were perplexed, since all of my blood tests came out totally normal. They drew more blood, gave me stronger meds, then made a same-day appointment with a dermatologist. Thank goodness I had Scott to drive me around. The dermatologist took a couple of biopsies (and when they say the numbing agent will pinch then burn, that burning is INTENSE), gave me a cream for the rash, and wrote me a note to keep me out of work for a week to rest. I cried a lot that day. There was a lot of pain.

Yesterday was a little better; I could walk (slowly), though I wasn’t much use in carrying things. And one of the meds they have me on, a super-strength antihistamine, is apparently also used for treating anxiety. I can see why, and I can see why I’m not supposed to go to work. I was a total space cadet, floating around on my little mental cloud. Scott said I was highly amusing.

So, here I am on my Monday, staying home. I took my meds, but I’m not completely goofy just yet. I still have the itchy rash (it flared up last night, so this morning I have the fading remnants, which are still blotchy and itchy). I still have many swollen, painful joints. I still have my sore throat. And now I have 5 tubes of blood and 2 skin biopsies out there in the medical ether, awaiting results. So let’s all cross our fingers for a definitive answer in the next few days, so treatment can really begin.

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  1. I have the same symptoms minus the sore throat. But the hives/rash, a little itchy. It flares at night and my joints swollen and painful. My fingers, wrist,knees and once my ankle. By the morning the hives/rash fading and the painful joints just sore. My doctor immediately thought a vector illness ie tick bite. I am still awaiting my lyme disease test results. I have been on doxcyline for 2 days with no improvement. What is this!!!


    missy Reply:

    Both a Dermatologist and a Rheumatologist couldn’t figure out what it was. In fact, the Rheumatologist openly told me, “In half the cases like this we see, we can’t figure it out.” Then he wanted me to visit again in a few weeks. No thanks.

    Fortunately, all of my blood tests were otherwise good — it wasn’t affecting my liver, kidneys, heart, lungs, or anything else vital.

    I had a colonoscopy, and my Gastroenterologist told me that my Crohn’s Disease, which had been mostly in remission for years, was active again. And apparently, Crohn’s can also manifest as a skin rash. I already knew that Crohn’s has its own arthritis, so they all seemed to go together. I’m now taking TWO immunosuppressive drugs for the Crohn’s (Azasan [azathioprine] and Cimzia [cetrolizumab pegol]), and haven’t had problems with any of the other external symptoms since then.

    Thing is, even if the rash/joints/throat turned out to be something other than Crohn’s, like Adult Onset Still’s Disease or something, since they’re all immune system drugs, they’re all treated the same way. So whether or not the other problems were Crohn’s, everything’s better all together with the same meds. Which is kind of handy.


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